In December of 2011 I tore a muscle in my left calf, all I was doing was walking across the parking lot of my sons school picking him up and I heard a pop and then extreme pain. I had to hop on one leg back to my car and wave my son over. I went to the Dr the following day and he confirmed that I had torn a muscle and prescribed a boot for me to wear and to rest it for 6wks. The swelling started almost from the begginning.
But, I thought the swelling was just due to the injury and thought nothing of it. As the weeks progressed it became harder and harder for me to walk. I was using a cane before long. Then the swelling continued even after the six weeks was up. By the time May rolled around I could no longer fit into any of my shoes. My feet would become so numb from the swelling that I began falling down. One day I fell in the lobby of my Dr’s office and hit my head. I was there to be seen to have the swelling checked out and see if he could figure out what was causing it. He was stumped.
By the end of Summer the swelling had increased so much that I could no longer walk without assistance of a walker, and this was just to and from the restroom in my house. For any longer distances I had to use a wheelchair. I went to the ER one night because the swelling in my feet was so severe we were afraid I was in congestive heart failure.
I saw three Dr’s that night, had my heart, lungs, and kidneys checked out and they were all fine. None of the three could figure out what was wrong. They sent me home and told me to see my regular Dr the next day, when I called to make an appt my Dr was out of town so I saw one of he other Dr’s in the practice. He walked into the exam room and before even looking at my chart informed me I was too fat and needed weight loss surgery. He also told me that my swelling was due to not walking enough. I tried to explain that the swelling was the reason I could not walk. He would not listen. I left there in tears and was so discouraged.
Over the course of the next few months I passed the 1 year anniversary of when I had my injury and the swelling was just getting worse every day. By May of 2013 I was so swollen in my legs, arms, stomach and feet. I could barely move, I could not fit comfortably into the passenger seat of a car. I had not driven in over a year due to the numbness in my feet. I had to go on disability because it was so hard just to walk from the living room to the bathroom. I had to sleep sitting up in a chair in the living room with my legs up on a ottoman. I could not sleep any other way.
I was in severe pain all the time. I was so miserable, I starting thinking about suicide. None of the Dr’s I had seen could find a reason for my swelling. So I was getting no relief. I had gained over 200lbs in less than a year, even though my eating habits had gotten healthier.
Then one day a friend suggested I might have Lymphedema. So I googled pictures of it. The photos I saw looked exactly like my swelling! I made an appt with my Dr and he agreed with me when I showed him the images I had printed out so he referred me to a vascular specialist. After waiting in the waiting room for over 2 hrs at the specialist, which caused the swelling to increase and cause me more pain, I was told that what I had was primary lymphedema and more than likely I was born with it. My leg injury back in Dec of 2011 was probably what caused it to manifest.
So I was then referred to a occupational therapist. Her name was Diane and she knew more about my disease than all the Dr’s I had seen the past few years put together!!!
She prescribed a manual lymphnode massage and a lymphatic pump for me. That machine cost over $8,000.00. My insurance paid a good chunk but I still have to pay $1300.00. The pump worked miracles! I lost 90lbs in fluid in the first two weeks. My pain levels decreased. I could actually lift my legs off the ground again even if only a few inches, because before I could not even move them without reaching down and picking them up with my hands.
Now I have moved onto the next phase of treatment. compression garments. The ones I have are off the shelf and cost me $1800 a leg, at a later point in time when the swelling has gone down some more I will need custom made garments, which I have no idea how I will afford. There are grants for breast cancer patients to pay for compression garments, but none for those that have primary lymphedema.
This disease has made me a prisoner in my home. I cannot drive , I cannot work. I cannot bathe by myself without falling and causing more serious harm. I have not been to one of my children’s sporting events, awards ceremonies, field trips or class parties in almost 2 years. I cannot go grocery shopping or out to dinner and vacations are a thing of the past. Going to the gym is also out because not only can I not get up onto the equipment like a treadmill, but they won’t hold my weight.
I can’t even go for car rides or sit at my desk for more than 5 min at a time because it causes my legs to swell even more and they go numb. I cannot do exercise without the compression garments because that will cause me more harm than good, and right now I cannot exercise with the garments because they don’t fit properly and fall off while I am moving.
I used to love cooking, thats a thing of the past as well because I cannot stand up while doing it and even sitting down to do small tasks like chopping vegetables is impossible. I can’t tuck my kids into bed at night. My husband and I can no longer have sex because not only are my legs too swollen and bulky to move, its painful for me to be touched.
My youngest son is afraid to hug me anymore because he is afraid of hurting me. When I go to the bathroom if I am in there too long he comes looking for me worried that I fell and hurt myself.
And I have not even touched on the embarrassment this disease causes me. People stop and stare, sometimes they point, some even laugh, a couple of times they have taken my picture. And even though they have never said it, I know its embarrassing to my husband and sons. When people look at me they see somebody who overeats and caused themselves to get fat. They don’t see somebody who has a disfiguring disease that has no cure.
One time I braved going to the grocery store, this was before the swelling got so bad that I simply could not leave the house but I still could not walk on my own. So I used one of the motorized carts in the store, A man walking behind me said loud enough for me to hear: “just because you weigh 400lbs and your legs can’t support you doesn’t mean you get the right to be lazy!” I asked my husband if we could leave, I never told him why.
My Dr signed off for me to have a handicap tag for our car so it is easier to get me in and out for Dr visits and so forth. One time as I was getting out of the car and into my wheelchair a lady walking by our car commented to her friend that “being fat is not a handicap”
I had never heard of this disease until I saw those pictures, none of my friends and family had heard of it until I told them I have it. We have to bring more awareness to it. We have to find treatments and maybe even a cure. Treatments that are affordable and are covered under insurance and medicare.
I try not to give up. I try to stay positive that I won’t always be this swollen and disfigured. I used to lead an active life. Now all I can do is sit in a chair and watch the world go by. If not for my laptop and the internet I would be truly isolated. I try to keep busy by reading, keeping in touch with friends online, researching everything I possibly can about my disease.
I want to someday go back to work, I want to go to the park with my sons before they are grown. I want to make love with my husband again. I want to walk on my own and no be out of breath after only a few steps. I want to not be in constant pain. I want to not be embarrassed to be seen. and I want my family to not be embarrassed by the sight of me.
On behalf of myself and every other person with this disease, Please pass this bill!
